The Last Days of Annie Bus A Chronicle of Dutch Euthanasia
Annie Bus of the Netherlands suffered from horrendous pain and paralysis, but not from a terminal illness. She wanted to die anyway. The story of how she got her wish demonstrates how difficult it is to set boundaries in a country that permits assisted suicide.
Constance de Vries sits in the kitchen and fills two syringes. She fills one with a strong anesthetic and the other with poison. She slowly dabs the excess liquid from the needle with a tissue before cautiously packing it up. Then she heads out to her car. At 2 p.m., Annie Bus is scheduled to die.
The two women have discussed the details of the procedure numerous times. During those conversations, they sat at the wooden table in Annie Bus' small home, located in the Netherlands just 15 kilometers (9 miles) from the German border. The walls around the table are covered with pictures of Bus' children and a cross. "Are you certain," de Vries asked on many occasions, as Bus sat in her electric wheelchair, her legs covered in a knitted blanket, her shoulders crouching slightly to the front as she smiled happily. "Yes, I am certain."
The 75-year-old listened patiently as the doctor explained Dutch euthanasia regulations to her. She would have a choice of drinking a deadly substance or having it administered by injection. The anesthetic would take effect within 10 seconds and, at most, she might yawn before losing consciousness. When the time came for the overdose of muscle relaxants, which would paralyze her respiratory system, she wouldn't feel a thing.
Bus fidgets in her wheelchair. She likes the sound of not feeling anything. She says she feels weak, even though she comes across as being very alive. She talks about how she used to dance in bars when she was young, how she became a mother at 24 and a grandmother at 44. Then, her voice falters. She moans quietly and bends forward.
A Life in Agony
An embolism 23 years ago left Bus paralyzed from her chest down. Osteoporosis has also left her with brittle bones. She's broken both of her femurs and several vertebrae as well as her lower left ribs, which are now pushing against her organs. Bus suffers from terrible pain, but does not have a terminal illness. When her husband cooks, she peels the potatoes and rinses the vegetables. And she laughs mischievously when she hears a good joke. She still has a number of years left in her.
But why should she go on living, she wonders, when every day begins and ends in agony and she is no longer capable of enjoying the time between?
It has been a year since Bus requested to die. In order to obtain euthanasia in the Netherlands, a person must prove that they suffer from an incurable illness and unbearable pain. At least that's how the law is written. But it doesn't specify how unbearable suffering should be defined.
Generally, a person's family doctor is responsible for a decision on assisted suicide in the Netherlands, but in Bus' case the physician rejected the request. Her husband insisted he would continue to take care of her. Her daughters also resisted their mother, saying, "You're on your own on this. Otherwise you'll just say: You want to get rid of me!"
The 'End of Life' Clinic
Bus turned to a clinic that specializes in assisted suicide. The Levendseindekliniek -- "end of life clinic" -- is located in The Hague. With high ceilings and small balconies in front of the windows, it's more of an office than a hospital. There are no beds and the patients don't come here to die. The suicide assistants come to the patients in their homes.
Almost three years after its opening, the clinic today employs 37 teams, each comprised of a doctor and a nurse. Last year, the clinic administered euthanasia to more than 200 patients. Four times that many requested suicide assistance. The clinic is a place patients can turn to if their own general practitioner refuses to provide euthanasia. And people working here seem to have a great deal of understanding for their patients' wish to die.
It's often the particularly controversial cases that wind up at the Levendseindekliniek, the ones that touch on the most sensitive question surrounding euthanasia: If a society legalizes assisted suicide, what are its limits? Among the patients here was a woman with a pathological fear of grime and bacteria who had a washing obsession as well as a 63-year-old man who feared loneliness after his retirement. In both instances, doctors here helped the patients to die.
De Vries and Bus became acquainted on Aug. 27, 2014. Bus never actually set foot in the Levendseindekliniek, deciding, like most patients, to die at home. Instead, the physician and the nurse drove out to her place to provide outpatient services. De Vries, 65, is wearing black eyeliner and orange nail polish. She's an energetic woman and doesn't sit on the fence. She says she understands that a person can live the way Bus has for a time, but not for years.
The patient's file is sitting next to de Vries, and it contains notes about each visit and each telephone conversation. After Bus dies, a three-person commission comprised of a doctor, a lawyer and an ethicist will review whether de Vries acted conscientiously. In total, the doctor will have met with her patient six times; four months will have passed between the first and the final visit.
De Vries reviews three pages written in shaky handwriting. "Annie Bus, born on Aug. 25, 1939, written request for euthanasia." In the request, Bus writes that she experiences "unbearable pain" and the feeling that her body has been "burned." She goes on to say that it humiliates and shames her to have to urinate into a bag. Bus also has "the feeling that the doctors have given up," because, whenever she asks for help, the answer she always gets is: "There's nothing else we can do."
Fulfilling the Criteria
A psychiatrist at Levendseindekliniek detected bitterness in Bus, but a lucid mind. A neurologist also confirmed that medicine could do nothing to relieve the neuropathic pain from which Bus is suffering. De Vries deliberated with the nurse, consulted the clinic and called the general physician. All were of the opinion that Bus fulfilled the criteria for euthanasia.
In October, Bus announced to her family that she couldn't wait to die; if possible she'd prefer it happen by the end of the month. By then, she was no longer asking -- she was insisting.
"When you die, it will not be at home," her husband demanded. If he had to continue living in the house, he said, it wasn't going to be with the memory of his wife's death there. His daughters pleaded, "Please also think about your grandchildren."
De Vries' runs her own practice as a general practitioner. Her everyday patients suffer from conditions like stomach ulcers or allergies, but also from dementia or cancer. But most of them want to keep living. De Vries moonlights as a euthanasia doctor, a job she does out of conviction. She says she hasn't actually counted the number of euthanasia patients she's had, but believes it's somewhere between seven and a maximum of 10 per year. She never conducts more than one assisted suicide in a day, although she did make an exception once.
Regardless how many lives she ends, de Vries says it will never become a routine thing for her. Within a minute, the person in front of her goes from breathing and talking to being dead. "And I'm the one who has killed them," de Vries says. "The first time, I was shaking," the doctor recalls, adding that she still gets nervous every time.
One time she even left a party in order to assist with a suicide. When she returned, her husband winked at her. He was the only one who knew where she had been. But if de Vries' work causes her to suffer, then she's done a good job of learning to hide it.
Are Lines Blurring?
The Netherlands became the world' first country to legalize euthanasia in 2002. One year later, 1,815 people sought assisted suicide in the country. By 2013, that figured had grown to 4,829 and represented more than 3 percent of all deaths in the country. Most of the patients suffer from terminal cancer, but the number of psychiatric patients suffering from depression, schizophrenia or anxiety disorders is climbing, with 42 last year. Those are particularly challenging cases because it is difficult to apply criteria for what people should be able to bear in their lives.
The commission recently reprimanded one of the doctors at the clinic. He had provided assisted suicide to a 47-year-old mother suffering from a bad case of tinnitus. The commission faulted the doctor because, it claimed, "not all treatment options had been exhausted." It was the third reprimand for the clinic within a year.
Do cases like that mean the lines are blurring for when it is acceptable to administer euthanasia? Opponents of assisted suicide warn against giving up on a person too soon, while euthanasia supporters view it as being an act of self-determination. Each time de Vries meets a new patient, she's forced to make the most difficult decision imaginable: Should this person be allowed to die?
It has just fallen dark outside when de Vries sits down on the sofa at 82-year-old Ms. K.'s place. K.'s left leg is resting on a stool and she is experiencing back pain. Her contact to the world is through her television and the Internet, but she's using both of them less these days. K. says she had always wanted to have children, but that her first husband died in a plane crash and her second from terminal illness. Although she may still be alive today, she says she feels as though her life ended back then.
De Vries says K. is suffering from a life that has come "full circle". It almost sounds like a diagnosis. Had the law stipulated that a life that refuses to end was grounds for euthanasia, the doctor says she might have helped her. In any case, the clinic ultimately rejected the request for assisted suicide because the woman wasn't suffering from any illness. Still sitting on the sofa, the doctor asks what the woman plans to do now. "Drown myself," K. responds.
Last year, 1,854 citizens of the Netherlands committed suicide. Backers of euthanasia argue that it would be more humane to provide them with the possibility of a dignified death rather than leaving them to their own devices to kill themselves in what are sometimes horrific ways.
A 'Pill for the Last Will'
The Levendseindekliniek was founded by Right to Die (NVVE), an association whose 161,000 members consider death to be a fundamental human right. For years, they've been fighting for a "pill for the last will" that any person who no longer wants to live is permitted to take.
For doctors like de Vries, it isn't easy to determine whether all hope has actually been lost. Some people only require a few positive experiences before they regain their courage to live. She cites a diabetes sufferer who wanted to say goodbye to her sister before her planned death. The sister lived on Aruba in the Caribbean. After the vacation, de Vries encountered a deeply tanned woman who was not only in bright spirits, but also no longer wanted to die.
Annie Bus also hesitates before taking the final step. Although it is bitterly cold in November, it is also the first sunny day in weeks. Bus suddenly she says something that prompts the doctor to pay very close attention.
"I find everything so beautiful. I want to live," Bus says.
"If you are having any doubts, then we won't do it," de Vries says.
Bus contemplates before responding: "If the pain weren't there, I would want to continue living."
Bus says she's afraid of needles because she has varicose veins. What happens if the doctor doesn't hit the vein? De Vries takes Bus' hand and strokes the veins along her wrist. "You don't need to be afraid," she says.
'In Good Times and Bad Times'
Bus' husband has pushed his chair up close to his wife. Absent-mindedly, he wipes the dust from the wheelchair with his thick fingers. "In good times and bad," he mumbles. Until death do us part. That's what the pastor said 52 years ago when they promised to take care of each other. He wore a top hat on the occasion and she wore a veil. "If it were up to me, she'd live to be 100 years old," he says, adding that he doesn't know if he wants to be present for her death.
Two weeks later, Bus no longer has any doubts. She wants to die. A second, independent doctor confirms de Vries' assessment and the two speak with the family. The daughters cry and the husband angrily says, "Not in our bed!" They all agree that Bus will die in her wheelchair -- on a Tuesday at 2 p.m.
One could argue that Bus actually has a good life. She lives in a one-story house with doors wide enough that she has no difficulty getting around in her wheelchair. Her husband lifts her out of bed every morning and places her in the shower. Before going to bed at night, he mixes two paracetamol pills in a glass of lukewarm milk. Sometimes he also pours a bit of cognac in the coffee. At night when lying down becomes too painful, he turns her over. And at 3 a.m., he inserts a suppository so that her bowels will be relieved into a diaper by morning. Bus has had enough.
Her bedroom looks like a hospital room. Bus hangs in the seat of a lifting device her husband uses to move her to and from the mattress. There's a diaper already there for her. She wheezes and then breathes in. "It hurts," she moans. He rolls her stockings down from her thin legs and places pillows beneath her ice-cold feet.
Bus cautiously stretches over towards her feeding cup, but she can't reach it. She grimaces -- more out of anger than pain. "I'm thirsty and I have to ask for water," she says. "If I want to go to the toilet, I have to ask someone." She complains that it is humiliating to have to be treated like a child. Her husband interrupts her. He has a gray emergency button in his hand, and a bell rings when he presses it. He says he comes immediately whenever he hears it. He smiles, but his wife curses.
Bus doesn't want to be a burden, but she is one. Some nights her husband has to get up as many as six times to turn her.
Is Better Care the Better Answer?
But the fate of Annie Bus is one that will be shared by many who are young today. They will be forced to live in convalescent homes, possibly suffering from dementia and reliant on care. Would it not be the better answer to improve care options rather than sending sufferers to their death?
"It's not a question of good care," de Vries counters. "What counts is freedom." She says the people she speaks to don't want to be placed "behind bars" in nursing homes. They're people like Alzheimer's patients who don't want to do jigsaw puzzles with "the other senile people" and men who don't want to pee in diapers. They see death as a blessing. Sometimes relatives send de Vries flowers after she performs euthanasia.
Annie Bus also yearns for the independence she lost 23 years ago. One morning, shortly before her 54th birthday, she lost all feeling in her legs. She managed two final steps before collapsing to the ground. She cried for help into an empty house and couldn't reach the phone. Using her arms, she crawled along the floor towards the window and pulled on a curtain.
A neighbor noticed the waving material and called the local doctor for help. But it took until evening before a specialist figured out what had happened. Detached tissue had blocked a vein leading to her spinal cord and her nerves had already been damaged by the time the doctor could act.
'It Just Isn't Fair'
Bus remains convinced to this very day that her legs could have been saved. However, it's more probable that her fate was determined within a matter of seconds. With great effort, she sits up in bed. "If something like that happens to you at 75, it's terrible," she says. "But if it happens to you at 54, it just isn't fair."
"Our mother never accepted her fate," says one of her three daughters, as the others nod in agreement. Once they knew their mother was going to die, they began visiting her every day. Today they've cooked beef soup together. The youngest daughter reads a poem. They stay together and reminisce about the person their mother used to be.
In earlier days, before the accident, she used to ride her bicycle everywhere -- to consumer electronics company Philips where she had a cleaning job, and to nearby Germany where she sewed shoes. She always worked -- and was not the type of person to sit still.
She loved Carnival (Mardi Gras). At nights in the bars, their mother would holler out to her daughters to stay, even when it was well past time to go home. "Have another drink!" Then they would dance together on the tables. On the tables? The women laugh. "Oh yes, on the tables!"
"We also often went on walks together in the forest at night," the youngest daughter recalls. Then she starts crying and one of her sisters embraces her.
The Moral Conflict of an Entire Generation
Can they understand that their mother wants to die? "I look at her and, above the chest, everything seems to be OK," one daughter says. "She says she's in pain," another interjects. "But of course we can't feel it," says the third.
The three women are confronted with the moral conflict of an entire generation: For people like Annie Bus, is death salvation or a terrible mistake?
Two days before her death, a retired priest performs last rites. Two other sitting priests had refused to do so, saying that Bus' wish violates the will of God -- and she hasn't ceased complaining about it since. She spent all of her 75 years as a Catholic and there are four wooden crosses hanging on the walls of her home, but when Bus needed the church's help, it turned its back on her.
The next day, the family watches old videos together. The same day, De Vries celebrates a goodbye party at her practice. It's her last day as a general practitioner, but she will continue working for the Levendseindekliniek.
Then Tuesday arrives. Before noon, an ambulance stops in front of the Bus' gray brick house. A paramedic connects a cannula to her vein, placing a bandage over the tube. De Vries is out of practice and has asked him to insert the tube so that she can't accidentally administer the shot in the wrong place. She's anxious about Bus' relatives watching and also about the patient's own fears.
At 1:15 p.m., de Vries sits at her dining room table and inserts the needles into ampules. The medicines have been sitting in her refrigerator for a week. She slowly fills the syringes as her two grandchildren watch "Snow White and the Seven Dwarves" on TV nearby.
De Vries writes numbers down on the syringes. The first contains a saline solution to rinse the cannula. The second will provide a light anesthetic to numb Bus' veins before she injects the third containing the full anesthetic. After that step, de Vries will inject the final shot containing 150 milligrams of Rocuronium, which paralyzes the respiratory muscles.
She carefully places the syringes in a Tupperware container. "Never show up too early," she explains in the car. "Otherwise you will disturb the family as they are saying their goodbyes." There's an emergency kit in a pharmacy bag on the back seat of the car. "You never know what might happen," she had said earlier.
'Yes, I Am Sure'
At 1:45 p.m. the car turns into the small street where Bus lives. De Vries grabs her doctor's bag, the other bag, the Tupperware container and rings the doorbell.
Everyone has come -- the daughters, Bus' husband, the grandchildren and 15 relatives and friends. They circle around her. One of the daughters holds her mother's hand. Her eyes are red. Bus smiles. So many people have come, just for her.
De Vries takes off the bandage so that she can access the cannula. She reaches for the first shot.
"Are you sure?" she asks.
"Yes, I am sure."
They lower the backrest on her wheelchair and place a pillow beneath Bus' head. Her husband moves closer to her and Bus' second daughter holds tightly onto her mother's hand. The youngest daughter is sitting at her feet. "Mom, do you still have anything you want to say?" she asks, squeezing her hand.
Bus starts to cry as she utters her final words. "I hope that nothing like this ever happens to you."
She says she wants them all to stay together, that she always had things good with them and that they should talk about their problems. Then her tears run dry and her voice grows quieter. De Vries strokes her cheeks.
At 2 p.m., the bells chime on the wall clock, but the crying of the family drowns out the sound. Annie Bus feels nothing.